IntroductionWhile it is well-established that follow-up care programs play a crucial role in preventing and early detecting secondary health conditions (SHCs) in persons with spinal cord injury [SCI, including spina bifida (SB)], the availability of evidence-based follow-up care programs remains limited. Under the leadership of the German-speaking Medical Society for Paraplegiology (DMGP), we have developed an evidence based clinical practice guideline for follow-up care of SHCs in persons with SCI and identify research gaps.MethodsThis guideline was developed in accordance with the regulations of the Association of the Scientific Medical Societies in Germany (AWMF e.V.). To ensure an evidence-based guidance, we utilized the International Classification of Functioning, Disability and Health (ICF) generic core set and ICF Core Set for individuals with SCI in long-term context as our foundational framework. We conducted a comprehensive literature review to identify existing recommendations for follow-up care and graded the level of evidence according to relevant instruments. Subsequently, we formulated recommendations and achieved consensus through a structured nominal group process involving defined steps and neutral moderation, while adhering to the criteria outlined in the German guideline development instrument (DELBI).ResultsAlthough there is a fair number of literatures describing prevalence and severity of SHCs after SCI, the amount of literature including recommendations was low (19 for SCI and 6 for SB). Based on the current evidence on prevalence and severity of SHCs and available recommendations, a clinical practice guideline on follow-up care of most relevant SHCs was defined. The recommendations for follow-up care are described in the following chapters: (1) Nervous system; (2) (Neuropathic) pain; (3) Cardiovascular diseases; (4) Respiratory System; (5) Immunological system, vaccination and allergies; (6) Gastrointestinal tract and function; (7) Endocrinological system and nutrition; (8) Urogenital system; (9) Contraception, pregnancy, birth and postpartum care; (10) Musculoskeletal system; (11) Pressure injuries; (12) Psychological health; (13) Medication and polypharmacy.ConclusionWe could successfully establish an evidence based clinical practice guideline for follow-up care of SHCs in individuals with SCI. There is however a notable lack of high-quality recommendations for SCI follow-up care.

STUDY DESIGN:Randomized, within-in participant cross-over study.OBJECTIVE:The purpose of this study was to determine the effect on comfort and pressure of lying with the shoulders and bed in different positions for people with tetraplegia.SETTING:Rehabilitation hospital.METHODS:Twenty people with tetraplegia were tested lying supine with the shoulders and bed in seven different positions. The positions used a combination of three arm and two bed positions. Six of the positions reflected what is commonly recommended in acute spinal cord injury units including a crucifix-type position. The seventh position was selected by participants and reflected their preferred sleeping position. There were five outcomes: general comfort, shoulder comfort, participant choice of preferred position, peak pressure under the shoulders and areal pressure under the shoulders. Pressure was measured using a pressure mapping system and comfort using a visual analogue scale (VAS).RESULTS:The participants reported significantly higher (P<0.01) general comfort and shoulder comfort in their self-selected position compared with all other positions. There was no statistical difference in peak pressure (P=0.15) or areal pressure (P=0.08) under the shoulders between the seven positions. Most participants indicated that they preferred to lie with their shoulders adducted and internally rotated and the hands either by their sides or on their stomachs.CONCLUSION:The position of the shoulders has little effect on pressure but a notable effect on comfort. Participants preferred to sleep with their arms beside their bodies, not with their arms in a crucifix position as commonly advocated.

STUDY DESIGN:Prospective cohort.OBJECTIVES:To characterize spinal cord injury (SCI)-related pain and treatment in victims of the 2008 Sichuan earthquake.SETTING:Mianzhu County, China.METHODS:Twenty-six patients who sustained SCI in the 2008 Sichuan earthquake and who were treated in the same hospital were enrolled. Data was collected on pain severity with a visual analog scale, depression with Patient Health Questionnaire-9, quality of life (QoL) with World Health Organization Quality of Life-BREF and social participation with the Craig Hospital Handicap Assessment and Reporting Technique Short Form at three assessment points. Detailed pain descriptions including therapeutic interventions were elicited at the fourth assessment. Pain determinants were analyzed with a longitudinal Tobit regression, and Pearson's correlations of pain severity with depression, QoL and social participation stratified by measurement point were calculated.RESULTS:SCI-related pain was highly prevalent and prevalence of neuropathic pain was nearly twice that of nociceptive pain. Most patients reported pain since the onset and severity was not significantly reduced over time. Cervical injury, complete lesions and education level were significant pain determinants. Depression and QoL scores were highly correlated with pain at the first two assessments points but not at the third measurement. Most patients did not seek treatment because they regarded pain as either a normal condition after SCI or were afraid of drug dependency.CONCLUSION:This initial longitudinal assessment and characterization of SCI-related pain in earthquake victims provides a foundation for further exploration of the biological and psychosocial determinants of pain severity and of the correlation of chronic pain with other outcomes of interest in this population. Patient pain-treatment-seeking behavior and therapeutic interventions should be evaluated concurrently.

Study design: Cross-sectional validation study. Objectives: To develop and validate a self-report version of the Spinal Cord Independence Measure (SCIM III). Setting: Two SCI rehabilitation facilities in Switzerland. Methods: SCIM III comprises 19 questions on daily tasks with a total score between 0 and 100 and subscales for ‘self-care’, ‘respiration & sphincter management’ and ‘mobility’. A self-report version (SCIM-SR) was developed by expert discussions and pretests in individuals with spinal cord injury (SCI) using a German translation. A convenience sample of 99 inpatients with SCI was recruited. SCIM-SR data were analyzed together with SCIM III data obtained from attending health professionals. Results: High correlations between SCIM III and SCIM-SR were observed. Pearson’s r for the total score was 0.87 (95% confidence interval (CI) 0.82–0.91), for the subscales self-care 0.87 (0.81–0.91); respiration & sphincter management 0.81 (0.73–0.87); and mobility 0.87 (0.82–0.91). Intraclass correlations were: total score 0.90 (95% CI 0.85–0.93); self-care 0.86 (0.79–0.90); respiration & sphincter management 0.80 (0.71–0.86); and mobility 0.83 (0.76–0.89). Bland–Altman plots showed that patients rated their functioning higher than professionals, in particular for mobility. The mean difference between SCIM-SR and SCIM III for the total score was 5.14 (point estimate 95% CI 2.95–7.34), self-care 0.89 (0.19–1.59), respiration & sphincter management 1.05 (0.18–2.28 ) and mobility 3.49 (2.44–4.54). Particularly patients readmitted because of pressure sores rated their independence higher than attending professionals. Conclusion: Our results support the criterion validity of SCIM-SR. The self-report version may facilitate long-term evaluations of independence in persons with SCI in their home situation.

Study design: A formal decision-making and consensus process integrating evidence gathered from preparatory studies was followed. Objectives: The objective of the study was to report on the results of the consensus process to develop the first version of a Comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set, and a Brief ICF Core Set for individuals with spinal cord injury (SCI) in the long-term context. Setting: The consensus conference took place in Switzerland. Preparatory studies were performed worldwide. Methods: Preparatory studies included an expert survey, a systematic literature review, a qualitative study and empirical data collection involving people with SCI. Relevant ICF categories were identified in a formal consensus process by international experts from different backgrounds. Results: The preparatory studies identified a set of 595 ICF categories at the second, third or fourth level. A total of 34 experts from 31 countries attended the consensus conference (12 physicians, 6 physical therapists, 5 occupational therapists, 6 nurses, 3 psychologists and 2 social workers). Altogether, 168 second-, third- or fourth-level categories were included in the Comprehensive ICF Core with 44 categories from body functions, 19 from body structures, 64 from activities and participation and 41 from environmental factors. The Brief Core Set included a total of 33 second-level categories with 9 on body functions, 4 on body structures, 11 on activities and participation and 9 on environmental factors. Conclusion: A formal consensus process integrating evidence and expert opinion based on the ICF led to the definition of the ICF Core Sets for individuals with SCI in the long-term context. Further validation of this first version is needed.

Study design: A formal decision-making and consensus process integrating evidence gathered from preparatory studies was followed. Objectives: The aim of this study was to report on the results of the consensus process to develop the first version of a Comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set and a Brief ICF Core Set for individuals with spinal cord injury (SCI) in the early post-acute context. Setting: The consensus conference took place in Switzerland. Preparatory studies were performed worldwide. Methods: Preparatory studies included an expert survey, a systematic literature review, a qualitative study and empirical data collection involving people with SCI. ICF categories were identified in a formal consensus process by international experts from different backgrounds. Results: The preparatory studies identified a set of 531 ICF categories at the second, third and fourth levels. From 30 countries, 33 SCI experts attended the consensus conference (11 physicians, 6 physical therapists, 5 occupational therapists, 6 nurses, 3 psychologists and 2 social workers). Altogether 162 second-, third- or fourth-level categories were included in the Comprehensive ICF Core Sets with 63 categories from the component Body Functions , 14 from Body Structures , 53 from Activities and Participation and 32 from Environmental Factors . The Brief Core Set included a total of 25 second-level categories with 8 on Body Functions , 3 on Body Structures , 9 on Activities and Participation , and 5 on Environmental Factors . Conclusion: A formal consensus process-integrating evidence and expert opinion based on the ICF led to the ICF Core Sets for individuals with SCI in the early post-acute context. Further validation of this first version is needed.

Study design: Cross-sectional, multicenter study. Objectives: To identify the most common problems of individuals with spinal cord injury (SCI) in the early post-acute and the long-term context, respectively, using the International Classification of Functioning, Disability and Health (ICF) as a frame of reference. Setting: International. Methods: The functional problems of individuals with SCI were recorded using the 264 ICF categories on the second level of the classification. Prevalence of impairment was reported along with their 95% confidence intervals. Data were stratified by context. Results: Sixteen study centers in 14 countries collected data of 489 individuals with SCI in the early post-acute context and 559 in the long-term context, respectively. Impairments in thirteen ICF categories assigned to Body functions and Body structures were more frequently reported in the long-term context, whereas limitations/restrictions in 34 ICF categories assigned to Activities and Participation were more frequently found in the early post-acute context. Eleven ICF categories from the component Environmental Factors were more frequently regarded as barriers, facilitators or both by individuals with SCI in the early post-acute context as compared with individuals with SCI in the long-term context. Only two environmental factors were more relevant for people with SCI in the long-term context than in the early post-acute context. Conclusion: The study identified a large variety of functional problems reflecting the complexity of SCI and indicated differences between the two contexts. The ICF has potential to provide a comprehensive framework for the description of functional health in individuals with SCI worldwide.

Eine Querschnittlähmung (QSL) ist Folge einer Schädigung der motorischen und sensiblen Bahnen des Rückenmarks und des vegetativen Nervensystems. Im Rahmen der Akutbehandlung wird meistens eine intensivmedizinische Behandlung notwendig. Bereits in dieser Phase muss eine integrierte und individualisierte Rehabilitation stattfinden, um einerseits Komplikationen bestmöglich zu verhindern und andererseits gute Voraussetzungen für die grösstmögliche Funktionsfähigkeit („expected outcome“) zu schaffen. Neben der Stabilisation der neuromuskulären Funktionen sind besondere Behandlungsprinzipien im Rahmen der Querschnittlähmung zu berücksichtigen. Insbesondere die Beeinträchtigung der vegetativen Funktionen in der spinalen und neurogenen Schockphase. Aus diesem Grund ist ein querschnittspezifisches Management von Hypotonie, Bradykardie, Hypothermie, Hypoventilation, reduziertem Hustenstoß und erschwerter Sekretexpektoration mit Bronchokonstriktion und Hypersekretion, Blasenfunktionsstörung, Gastro- und Kolonparese notwendig.

Treadmill training is used for gait rehabilitation in various neurological conditions. Robot-assisted treadmill training, automates repetition of the Pit cycle and call reduce the load on therapists. Here we investigate the use of robot-assisted treadmill technology in cardiopulmonary rehabilitation and assessment.Using a new approach to exercise work rate estimation and volitional control, we propose cardiopulmonary assessment protocols for robot-assisted gait exercise. designed for estimation of cardiopulmonary performance parameters. Feasibility was explored in three subjects with incomplete spinal cord injury using the Lokomat system.Estimation and visual feedback of exercise work rate allowed all subjects to accurately follow specified work rate profiles in real time by means of volitional control. We were able to estimate the main cardiopulmonary performance parameters from constant work rate and incremental tests. "Passive" walking elicited a substantial metabolic response: on average, oxygen uptake ((V) over dot(O2)) was a factor of 1.8 higher than during rest. The magnitude of peak (V) over dot(O2) above rest. obtained from incremental tests, was a factor of 4-6 higher than the increment in (V) over dot(O2) for passive walking, thus emphasising the importance of the subjects' active participation in the exercise.Visual feedback and volitional control of estimated exercise work rate facilitates the imposition of work rate profiles for estimation of cardiopulmonary performance parameters in robot-assisted gait. This new approach could be used to guide a patient's training regime during a cardiopulmonary rehabilitation programme, and for periodic assessment of cardiopulmonary status. (C) 2007 Elsevier Ltd. All rights reserved.

OBJECTIVE:The objective of this paper is to outline the proposed development process for the ICF Core Sets for Spinal Cord Injury (SCI) and to invite clinical and consumer experts to actively participate in this process. ICF Core Sets are selections of categories of the International Classification of Functioning, Disability and Health (ICF) that are relevant to persons with a specific condition or in a specific setting.METHOD:The project is a cooperation between the ICF Research Branch of the World Health Organization (WHO) Collaboration Centre of the Family of International Classifications (DIMDI, Germany), the Classification, Assessment and Terminology (CAT) team and the Disability and Rehabilitation (DAR) team at WHO, the International Spinal Cord Society (ISCoS) and International Society for Physical and Rehabilitation Medicine (ISPRM) and partner institutions across the world. The project will consist of four worldwide studies to be conducted from 2006 to 2007 with a proposed ICF Core Set Consensus Conference to be held in 2007. ICF categories relevant for SCI are to be identified by means of (I) an empirical study, (II) a systematic review of outcomes and measures used in SCI research (III) an expert survey and (IV) focus groups and semistructured interviews with persons with SCI. Consensus about items that have to be part of a Comprehensive and of a Brief ICF Core Set for SCI will be reached in a final ICF Core Set Consensus Conference. Subsequent field testing will be necessary to validate this first version of ICF Core Sets for SCI.INVITATION FOR PARTICIPATION:The development of ICF Core Sets is an inclusive and open process. Anyone who wishes to actively participate in this process is invited to contact the project coordinator (Monika.Scheuringer@med.uni-muenchen.de or http://www.icf-research-branch.org/research/spinalcord-injuries.htm). Individuals, institutions and associations can be formally associated as partners of the project.

OBJECTIVE:To avoid neurological deterioration, traumatic spinal cord injury has to be recognized as early as possible. Aim of the study was to analyze alterations of the neurological level of injury in the preclinical interval.METHODS:In a prospective observational study the clinical diagnoses of 100 patients referred to the Swiss Paraplegic Centre in Nottwil, Switzerland, were compared to the preclinical diagnoses.RESULTS:In 12 patients we observed neurological deterioration for more than 2 spinal segments. Six of these patients had been diagnosed preclinically with paraplegia at a neurological level of T4 or T5, whereas the evaluation in the hospital showed cervical spinal cord injury and tetraplegia.CONCLUSION:Possible reasons for this neurological deterioration can be secondary damages of the nervous tissue due to vascular, metabolic or biochemical mechanisms, transportation trauma or insufficient preclinical diagnostics. There is no evidence for a higher risk of secondary tissue damage for patients with cervical spinal cord injury. None of the six patients had additional injuries of the spinal cord or the vertebral column in the thoracic region, therefore transportation trauma is also unlikely. It is more likely that preclinical diagnoses were incorrect, what could have been avoided by consequent sensory and motor testing at the upper extremities.

Objective: To avoid neurological deterioration, traumatic spinal cord injury has to be recognized as early as possible. Aim of the study was to analyze alterations of the neurological level of injury in the preclinical interval. Methods: In a prospective observational study the clinical diagnoses of 100 patients referred to the Swiss Paraplegic Centre in Nottwil, Switzerland, were compared to the preclinical diagnoses. Results: In 12 patients we observed neurological deterioration for more than 2 spinal segments. Six of these patients had been diagnosed preclinically with paraplegia at a neurological level of T4 or T5, whereas the evaluation in the hospital showed cervical spinal cord injury and tetraplegia. Conclusion: Possible reasons for this neurological deterioration can be secondary damages of the nervous tissue due to vascular, metabolic or biochemical mechanisms, transportation trauma or insufficient preclinical diagnostics. There is no evidence for a higher risk of secondary tissue damage for patients with cervical spinal cord injury. None of the six patients had additional injuries of the spinal cord or the vertebral column in the thoracic region, therefore transportation trauma is also unlikely. It is more likely that preclinical diagnoses were incorrect, what could have been avoided by consequent sensory and motor testing at the upper extremities.

A patient with chronic inflammatory demyelinating polyneuropathy (CIDP) developed Evans syndrome (hemolytic anemia/thrombocytopenia) 17 months after onset of symptoms despite different immunomodulatory treatments. A therapeutic approach with the chimeric monoclonal anti-CD20 antibody rituximab induced substantial improvement of CIDP and hematologic recovery. The patient remains in sustained remission 17 months after completion of therapy. Rituximab may represent a successful therapy in otherwise refractory CIDP.

STUDY DESIGN:Retrospective review of patient data.OBJECTIVES:(i) To determine the incidence and time of deep vein thrombosis (DVT) under low molecular weight heparin (LMWH) prophylaxis in spinal cord injury (SCI), (ii) to determine the incidence and time of heterotopic ossification (HO) and (iii) to assess a possible aetiologic relationship in the pathogenesis of DVT and HO.SETTING:Swiss Paraplegic Centre, Nottwil.METHODS:We analyzed the incidence of DVT and HO in 1209 SCI patients (275 first rehabilitations) at the Swiss Paraplegic Centre Nottwil from 1998 to 2000. Clinical files and laboratory data were scrutinised for particularities preceding DVT and HO.RESULTS:The incidence of DVT was 6.55% for first rehabilitation compared to only 1.59% in all patients hospitalised. DVT was complicated by pulmonary embolism (PE) in 1.45% and 0.47% respectively. Incidence of HO was 8% for first rehabilitation and 1.82% for all patients hospitalised. In first rehabilitation patients the peak for DVT occurred around day 30 contrary to HO with a peak around day 120. In single patients HO was identified by MRI as a rapidly progressing process. Laboratory profiles were inflammatory in both HO and DVT. Increased physical activity preceding HO was observed in four patients. In two patients acute HO was complicated by ipsilateral DVT.CONCLUSION:Prophylaxis with LMWH and elastic stockings significantly reduces the frequency of DVT during first rehabilitation in SCI. DVT and HO are both associated with laboratory parameters of non-infectious inflammation. The later onset of HO coinciding with ongoing mobilisation, argues for a different pathogenetic mechanism. Acute HO of the hip region appears to favour ipsilateral DVT by well known thrombogenic mechanisms.

Objective: To measure spasticity of the knee flexors and extensor muscles in two different hip positions. Setting: Swiss Paraplegic Center Nottwil, Switzerland. Methods: Twenty spinal cord injured (SCI) patients with complete lesions were tested with a torque-velocity dynamometer in the following positions: (1) supine with a hip angle of 0°; (2) sitting with a hip angle of 90°. The excursion of the knee was measured for both positions using a goniometer. Two flexion/extension movements of the knee were performed at a speed of 10° per sec. A further four flexion/extension movements over the same trajectory were made at a speed of 120° per sec. Eccentric peak torques were measured continuously during movement of both legs for both speeds. Results: At a speed of 120° per second, there was a significant difference in stretch reflex of the hamstrings and quadriceps femoris muscles for the two positions (Wilcoxon's paired t-test, P<0.05). Excitability was higher for the quadriceps femoris muscles in supine than in sitting position. For the hamstrings, the effect was reversed. Significant differences between sitting and supine position were not found for the speed of 10° per sec. Test–retest reliability was high for the movements of 120° per sec but low for 10° per sec. Conclusions: Our findings indicate that for a reliable and comparable measurement of spasticity, an exact description of test position and procedure is essential.

Objective: To include a larger number of tetraplegics than in previous studies, in order to more reliably characterize the pathogenesis and predisposing factors of sleep apnea in tetraplegia. Methods: Sleep breathing data and oxymetric values were investigated in 50 randomly selected tetraplegic patients and discussed in context with age, gender, BMI, neck circumference, type and height of lesion, time after injury, spirometric values and medication. A non-validated short questionnaire on daytime complaints was added. Results: Thirty-one patients out of 50 had an RDI ⩾15, defined as sleep disordered breathing (SDB); 24 of them combined with an apnea index of 5 or more, these cases were diagnosed as sleep apnea syndrome (SAS). SAS was apparent in 55% and 20% of the studied men and women, respectively. Regression analyses showed no significant correlation between RDI and lesion level, ASIA impairment scale or spirometric values. In contrast, a significant correlation between RDI and age, BMI, neck circumference and time after injury could be shown. Kruskal-Wallis test for dichotomous non-parametric factors, such as gender, cardiac medication and daytime complaints, showed significant differences with regard to RDI. In contrast to able-bodied people with SAS, daytime complaints were only present in tetraplegic patients with severe pathology (RDI>40). Conclusion: Incidence of SAS is high in tetraplegia, particularly in older male patients with large neck circumference, long standing spinal cord injury and under cardiac medication. As tetraplegics with RDI between 15 and 40 reported no daytime complaints and often have normal BMI, these tetraplegics are not clinically suspicious for SAS. The increased use of cardiac medication in tetraplegics with SAS may implicate a link between SAS and cardiovascular morbidity, one of the leading causes of death in tetraplegia.

Die Arbeitsgruppe für Heimventilation ist eine ständige Institution der Lungenliga Schweiz und der Schweizerischen Gesellschaft für Pneumologie. Sie wurde 1985 von PD Dr. Rodolphe de Haller ins Leben gerufen. Als damaliger Präsident der Lungenliga Schweiz legte er zusammen mit Rolf Sutter, dem Direktor des SVK (Schweizerischer Verband für Gemeinschaftsaufgaben der Krankenversicherer) den Grundstein für die Finanzierung der Heimbeatmung. Diese steckte damals in ihren Anfängen, setzte eine Tracheotomie voraus und nur Visionäre konnten ahnen, dass daraus innert zweier Jahrzehnte eine der segensreichsten internmedizinischen Therapien werden würde. Die Arbeitsgruppe für Heimventilation, deren erster Präsident Jean-Claude Chevrolet war, legte Qualitätsstandards fest, schrieb Richtlinien [1] und übte vertrauensärztliche Funktion gegenüber dem Kostenträger, dem SVK, aus. Die praktische Bedeutung dieses Sachverhaltes lag damals wie heute darin, dass jede Indikation zur Heimventilation von einem Mitglied der Arbeitsgruppe bezüglich Konformität mit den Richtlinien begutachtet und gebilligt werden muss, um die Kostenübernahme durch den SVK auszulösen. Eine wichtige Folge der Überprüfung der Indikationen ist die Tatsache, dass jede fragwürdige oder neuartige Indikation in die Arbeitsgruppe einfliesst und mit dem Verordner ausdiskutiert wird. Wegen problematischer Erfahrungen, die an verschiedenen Schweizer Zentren mit invasiv langzeitbeatmeten Patienten mit amyotropher Lateralsklerose (ALS) gemacht wurden, beschäftigte sich die Arbeitsgruppe für Heimventilation seit ihrer Gründung wiederholt mit der Frage der Beatmung von Patienten mit ALS. Gesuche um Kostenübernahme häuften sich in den letzten Jahren, weshalb das Thema «Atemprobleme bei amyotropher Lateralsklerose» von den Mitgliedern als Haupttraktandum an der Jahresversammlung 2000 in Luzern besprochen wurde. Ziel der Besprechung war, unseren Schweizer Patienten mit ALS (jährlich etwa 75 neue Fälle) bezüglich Atemprobleme eine optimale Betreuung zukommen zu lassen. Die Arbeitsgruppe wollte damit in die respiratorische Palliation dieser schweren Erkrankung das Element der Qualität einbringen und möglichst landesweit garantieren helfen. In diesem Sinne wird das Protokoll der Referate und Diskussionen an dieser Stelle zusammengefasst und veröffentlicht. Nicht Thema dieser Stellungnahme ist die invasive Beatmung im Frühstadium der Erkrankung, z.B. im Rahmen einer Pneumonie, wenn eine Entwöhnung noch möglich ist.